Baby Charlie Whitaker is suffering from one of the world's rarest diseases, writes Richard Abbott.

The six-month-old is one of just 400 people IN THE WORLD stricken with Diamond Blackfan anaemia. There are fewer than 50 sufferers in Britain.

His mum and dad Michelle and Jayson rushed Charlie to hospital just before Christmas when he turned pale and stopped feeding.

Doctors told them Charlie was suffering from the extremely rare blood disorder and would need a transfusion every three weeks to keep him alive. Michelle, of Isis Avenue, Bicester, said: "If we hadn't taken him in, he probably would have died in his sleep. We had to wait weeks to find out what was wrong but it's a huge relief that we now know the extent of the problem.

"When we took him in his red blood cells were less than 25 per cent of normal. We have been told he could have stunted growth and will need frequent transfusions.

"What we are trying to do now is raise people's awareness about the illness and gather money for research into it." The Whitakers are launching a support group for the families of sufferers, who develop Diamond Blackfan anaemia when their bone marrow fails to produce enough red blood cells to push oxygen round the body.

Drugs can counter this, but side-effects range from stunted growth to cataracts.

Another option for sufferers is a bone marrow transplant, although a less-than-perfect match between donor and recipient could prove fatal. Michelle explained: "This is why we have to raise money for research.

"Drug companies all but ignore the illness. There is no incentive to spend huge sums on an affliction that affects so few."

Charlie will begin steroid treatment after his first birthday, but the future is uncertain.

Anyone wanting to help the support group can call 01869 369836. *See Features for more information.

Story date: Tuesday 13 April

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